Blog

Nov 26
7

A Gratitude Post

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We are grateful for…

  • Macaroni and cheese
  • Friends who listen
  • Good health insurance
  • Snow (this one is all Cassie)
  • Laughter and hugs from our nieces and nephews
  • Long walks
  • A cuddly basset hound
  • Jeopardy (especially the episodes with James Holzhauer)
  • New restaurants and dining experiences
  • Good books
  • Dumb jokes
  • Red wine (OK, white and rose too)
  • Holiday parties
  • Caregiver support (Jack’s Caregiver Coalition)
  • Caregetter support (Firefly Sisterhood)
  • A superb oncology team
  • Soft blankets
  • Colleagues who have your back
  • So many good local breweries
  • Clarity about what matters most
  • Sweat pants
  • Winona
  • A crackling fire
  • Exceptional therapists
  • Binge worthy television
  • The Highland Grill
  • DB
  • Brothers and sisters
  • Parents
  • Turkey and stuffing
  • Things on the calendar to look forward to
  • Enduring love
Nov 19
11

Resilience

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Today Doc got his tail caught in a door. Dan was taking him for a walk and heard him yelp but didn’t notice anything wrong and assumed the door had just banged on him a little. He finished the walk and left Doc at home as he headed out to meet a friend for breakfast. Cassie was already out having breakfast and preparing to go to her favorite exercise class.

Then Cassie got a text. It was our cleaning person, Emily, expressing concern about Doc. She said there was blood everywhere. The house looked like a crime scene. Doc’s tail looked cut but Doc wouldn’t let her near him. Cassie rushed home calling Dan as she drove. We were both really worried.

The house was as reported. Blood on the carpets. Blood on the sofa. Blood all over Doc. Emily told Cassie she had been so worried when she walked in that she looked all over to see if we were ok. We were — Doc wasn’t. He was crying and still bleeding. Cassie called Dan on her way to the vet and he literally came unglued. She couldn’t understand a word he was saying as she sought to learn what had happened. He was sobbing, the dog was whimpering, Cassie was driving fast. It was a little chaotic to say the least.

After the rapid trip to the vet Doc now has a long pink bandage on his tail and is drugged out of his mind. There is some concern about whether he will fully heal and if not he will have to have the tip of his tail removed. Poor guy. 

Now unexpected things like this happen all of the time (though thank goodness this particular one hasn’t happened before). Historically when things arose we would just deal (just as Cassie did today) and then move quickly on. We have long prided ourselves on being pretty good in challenging situations and even better in a genuine crisis. Now though, following Cassie’s diagnosis, things like this knock us on our heels. We cry more easily. We worry more. We obsess in ways we didn’t before. We overreact. We catastrophize. Today it was about Doc. Last week it was a challenging work call for Dan. The week before a hard series of events for Cassie. What we are noticing is that we simply aren’t as resilient as we used to be. We are raw. Most of our energy goes to getting through the day and trying to stay as positive as we can. So when something unexpected and hard arises that extra gear we used to rely on isn’t as easy to access or maintain. Recognizing this lack of resilience helps. Naming it is even more important. And the best antidote we have found is to slow down and be gentle — on ourselves and each other (and on Doc).

Nov 13
8

Owning Your Own Story

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It is so easy to take on other people’s bad news and transfer others’ suffering to your own life. Someone else’s cancer spreads to their central nervous system. The wife of someone in a caregiver support group has a bad scan.  You get a blog update that describes another MBC patient’s significant disease progression. Or a blogger you follow stops posting altogether because they have died. And you think, “we’re next.” 

We’ve learned that taking on others’ experiences as our own leads us nowhere good! It is so easy to end up in a downward spiral and in a puddle of extreme hopelessness. But, as Kelly Grosklags, an oncology psychotherapist who spoke at the recent Midwest Metastatic Breast Cancer conference, reminded us: “Those are not our stories.”  We can feel empathy and concern for others without taking on their experiences as our own. Their story is not our story. Our story will be different from everybody else’s. All of us dealing with metastatic disease will experience the illness in different ways. The ups and downs. The test results. The side effects. All are unique to our situation. Our story is our own.

We found that bit of advice — to own our story – to be extremely helpful. Not just in dealing with cancer, but in living life. How many times have we heard a piece of bad news and taken it on as our own? Too many to count and it only leads to more anxiety, fear and dread.  So now we are committed to listening to the stories of others and empathizing with their experiences but owning only our own.

Nov 08
11

Caregivers Have Feelings Too

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Last weekend Dan and I, along with my parents, attended the Midwest Metastatic Breast Cancer Conference. It was interesting and we learned a lot about medical research, clinical trials, palliative care, integrative health, and advocacy and got to connect with others living with MBC. Dan co-led a session on being a caregiver and that, combined with some thinking I was already doing, has me reflecting on the role of caregivers. 

The life of a caregiver is tough. Always putting the needs of the “care-getter” above their own. Sacrificing personal wants and needs for the other. And sometimes minimizing their own emotions and feelings of sadness about their loved one’s illness in order to keep a brave face.

As a care-getter with an amazing caregiver, I need to remember how hard this is for Dan. My cancer affects him deeply . . .And, he is allowed to show it. To others and to me. 

For the last couple of weeks, I’ve noticed Dan feeling more down than usual. He was going about his day-to-day life, but I sensed an unusually deep layer of sadness and discontent. Kind of one of those things that when I was healthy I’d wonder whether I’d done something to piss him off! But this time I heard the voice in my head saying: “Of course he is sad, his wife has a terminal illness.” Dan’s life has been turned upside down. Much of what we had hoped for and expected from our lives together is different now. 

It is interesting to experience how our relationship has changed since the early days of my diagnosis. Moving from “deal” mode, to settling into the ongoing reality that this is our life now. 

How do I as a care-getter support my caregiver? Can our roles ever switch back and forth? I’ve been trying to encourage Dan to do things that are fun for him and that don’t necessarily include me. However, he is often hesitant to do that because he wants to maximize our time together. But self-care for both of us is now more important than ever. How do I help him with his? Is there a way for us to have days where we step out of our caregiver/getter roles? Maybe not but perhaps we can redefine those roles to fit where we both are and what we both need right now. 

Nov 01
8

The Shallow End of the Swamp

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It’s been roughly 15 months since Cassie was diagnosed. In that time, we have learned that one of the most challenging things is balancing conflicting realities. For example, on many if not most days, Cassie feels pretty crappy (not that you could tell by looking at her but that’s a whole other blog post). She’s got far less energy than she had before — a third less on a stellar day — her joints hurt and she often just feels what we have come to call “ooky.” It’s a pretty crummy way to have to live but it’s Cassie’s reality.

Another reality is that this period of time, right now, in the years immediately following diagnosis likely represent the best that Cassie will ever feel again. This is it. We are in the MBC “glory days.” On the top floor. In the rose garden of terminal diagnosis. This is as good as it will probably ever be and that’s a reality too.

So you put those two realities together and it can make your head spin. Cassie feels pretty crappy. This is the best that Cassie will ever feel. WTF? 

Dan was talking about this in therapy a while back and his therapist got it right away and said: “Yeah you are in the shallow end of the swamp.” That framing immediately resonated with both of us. We are most definitely in the swamp and the swamp sucks. There are metaphorical snakes and alligators and bugs and it’s hot and unpleasant. But in the shallow end you can still move around and occasionally find dry land. You can navigate and get some relief. For us, being in the shallow end of our cancer swamp means that’s Cassie side effects are pretty minimal. That she can still drink wine and travel and that we do a lot of the things we enjoy, even if we have to do them differently than before.

When we think about being in the shallow end of the swamp it’s not the same as saying that our glass is “half-full” (nothing about this glass is good). It is more about acknowledging that our  realities don’t have to be in tension. Both are true. We also have a choice. What are we going to focus on each day? The swamp and how shitty that is, or the fact that we are not yet in the deep? On good days we remind each other that we are in the shallow end and try to take advantage of it. It’s not easy but right now it’s the best we’ve got.

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